Aids Activists Defied The Fda -and Made A Point

December 18, 1992|By Reviewed by Chris Petrakos, A writer who reviews frequently for the Tribune.

Acceptable Risks

By Jonathan Kwitny

Poseidon, 466 pages, $24

As information about new medical treatments and research has become more accessible, the near-mystical authority the medical establishment once enjoyed has broken down, often leaving mistrust, suspicion and, in the case of AIDS, even paranoia in its wake.

Among its many accomplishments, ``Acceptable Risks``-which chronicles the determined efforts of two California activists in obtaining unapproved drugs for AIDS patients-reveals how deep can be the abyss between the sick and health- care providers.

The book begins in the mid-1980s, amid a climate of terror as the impact of AIDS is beginning to be felt. Frustrated by the Food and Drug

Administration`s cumbersome drug approval process-it routinely takes about 10 years for the agency to decide that a drug is ready to be sold on the market- the gay press began printing news of potential alternative treatments.

At the request of one of his patients, Jim Corti, a medical nurse in Los Angeles, started making trips to Mexico to buy ribavirin, an anti-viral agent that`s legal in many parts of the world and was rumored to be effective against AIDS.

At about the same time, Martin Delaney, a successful corporate consultant in San Francisco, began traveling south of the border to buy isoprinosine, a drug that bolsters the immune system, for his lover who had contracted the disease. News of both men`s activity spread quickly in the gay community, and soon they were smuggling large quantities of both drugs across the Mexican border for buyers all around the country.

By the end of 1985, Delaney had founded Project Inform, which went on to become the nation`s largest AIDS information group. His activities put him in direct conflict with the FDA, which was mired in bureaucratic squabbling and turf wars.

Just as important, many of the time-honored procedures for testing new drugs-such as trials in which half the patients received a placebo-had invited resentment in the AIDS community. Why would a patient, Delaney and others argued, participate in a study where there was a 50 percent chance of receiving a worthless drug?

The book`s strongest section centers on the decision by Delaney and Project Inform to stage a secret, community-based trial of a promising drug from China, called Compound Q, in 1989. Delaney wanted to show that a drug`s dangers could be proven in a short period of time.

Using samples of the drug that Jim Corti had bought in China, Delaney organized the test in three cities around the country, using volunteers who were willing to ingest an unknown and possibly dangerous drug for the chance of surviving their illness.

While all of this is gripping material, author Jonathan Kwitny, a former reporter at the Wall Street Journal, tends to write uncritically, especially concerning the medical consequences of Corti`s and Delaney`s work. Have they made it easier to assess the effectiveness of new drugs or more difficult and confusing, as some researchers contend?

Beyond that are the issues we face in confronting any serious disease. Kwitny acknowledges the importance that medical remedies not be

misrepresented. ``The FDA,`` he writes, ``is the institution in place to fulfill that function. But does that mean we have to tolerate a government agency that tells us what we can and cannot take to save our own lives? I cannot see why one requires the other.``